Saturday, December 22, 2012

Of Jesus, Feminists and Chewing Your Food

Lately I have had a few links to articles come up on my Facebook feed.  Articles which tell me JESUS IS A FEMINIST!!  And yes, they get that excited about it.  To be honest, this disquiets me.

I love passionate people.  They are fantastic.  They get stuff done, they get super excited about their ideas and nobody has better debates and arguments than a passionate person.  However one thing I have discovered about passionate people, specifically passionate Christians, over the years is that sometimes their passion can eclipse the thing they are passionate about.  Then, sometimes, they begin to re-create Jesus in their image.  The scenario I have seen goes like this.  Christian discovers an aspect of Jesus, their faith and/or the Bible which revolutionises the way they see themselves and the people around them.  Christian gets passionate in the application of this insight and finds others with whom to share their conclusions and the resulting life changing impacts.  All good here so far.  This, however, is where it starts to get kooky.  Christian becomes so devoted to this new insight that they begin to paint Christ and Christian living as a caricature, placing emphasis on this newly discovered aspect and de-emphasising other aspects which balance or do not directly support their own soap-box issue.  Over time this can lead to recreating Christ in their mind.  Like those who love the law who oft quote James, but neglect to open Romans.  Like the Christian who seeks the emotional highs of worship and espouses Grace but avoids those parts of the Bible that may make them feel bad about their week-day choices.

The truth is, neither law and justice nor grace are absent from the nature of Christ.  The Bible speaks long and often about the terrible and unattainable beauty of the law being a refuge and a safe guard to those who love God - a light to our path.  Grace is beautiful.  Amazing in fact, even awesome - as in inspiring true awe within my soul.  Without it I would have no hope.  The more I learn about these aspects of Christ and the Bible and discern how they apply to my own life, the more I realise that they are in no way contradictory, but complementary.  In fact, without grace the law is terrible and frightening, without the law we do not understand our need of grace.  When I am presented with caricatures of Christ which emphasise either the Law or Grace I recognise the Jesus I know within the presentation.  By their very nature, caricatures take easily recognisable features of the one they are trying to portray and emphasise them.  However to stop at the caricature is to deprive yourself of knowing ALL of Jesus and to risk starting to recreate Him in your own image and begin worshiping yourself and your own ideas - labelling them as Jesus.  These are two big ideas about Jesus, but the same applies to other doctrines and insights.

This brings me to disquieting point #1:
When we apply emphasis to one aspect of Christ to the neglect of the other aspects of Christ and continue to do this long term, we risk missing who Christ really is.

There are many who would call me a feminist.

I believe in women's right to vote, to an education, to equal pay and equal rights under the law.  I personally support and spread knowledge of causes which defend women's rights and health such as the global outlawing of female circumcision, the provision of medical treatment for women suffering fistulas or prolapse in countries where they are neglected or treated as cursed, women's refuges to provide a haven for victims of domestic abuse.  I keep myself informed of the current statistics concerning the trafficking of women and girls and support the rehabilitation of sex workers and protect vulnerable girls in Thailand.  I think women, by nature, are powerful and influential - far more so than most actually grasp.  There are many, many other ways that I support, promote and protectively work toward rights and protection for women.

However there are many who would call me anti-feminist.

I do not agree with abortion, even in cases of incest, rape and (perhaps especially) handicap identified by prenatal testing.  Not an opinion I hold lightly.  I believe women should submit to their husband (one day I am going to write something about the definition of that word "submit" - it's interesting).  I believe men should hold most of the leadership positions in churches.  I no longer preach to mixed congregations as I do not feel that, as a woman, it is Biblically appropriate for me to do so unless under direct instruction from God.  I believe in taking reasonable responsibility for the sexual impact you can have on others in the context of dress and conduct.  I believe in saving sex for the marriage relationship.  Hang, there are plenty of feminists who would throw me out of the club for believing in MARRIAGE!

The thing is, feminist is a very loose term open to interpretation and what I mean when I use the term may be completely different to what you mean.  There is so much diversity within this label that perhaps they only unifying characteristic of feminists is that they believe in and are committed to defending`and promoting the rights of women.

In this broad definition of feminism, of COURSE Jesus was a feminist!  He treated women with respect.  They financially supported his ministry.  He specifically reached out to them.  The early Church had highly influential members who were women (Lydia, Priscilla, Tabitha - just to name a few).  Paul wrote in Galatians that men and women are one in Christ.  However, with a slippery, ill-defined label which is open to interpretation comes a whole lot of things which Jesus was not.  I believe great caution should be used with labels such as this.

Disquieting point #2:
"Feminist" is open to interpretation and is imprecise language therefore when applying this label indiscriminately to Christ, you are opening yourself, and Jesus, up to misinterpretation.

Another thing I have noticed within these JESUS IS A FEMINIST articles, there are often wild generalisations or outright inaccurate statements made.  Please note the irony of fact that the previous statement did, in fact, contain a wild generalisation.  The internet is a fabulous place with the exchange of ideas and thoughts made easier and more free than ever before  No longer does a writer have to go through the long process of editing and fact-checking in order to get their writing into a publication.  No longer does a person have to purchase a book or journal or newspaper to read the ideas of others or send an article via the mail system.  In a few simple clicks information can be shared and ideas explored.  But by the same token, misinformation and misinterpretation can be shared with a few simple clicks.

Source: via Jess on Pinterest

Don't get me wrong, I respect the intellectual courage it takes to put your ideas out there.  In my experience, inaccuracies often are not intentional.  In internet land, an idea is put forward with the preface "I wonder if..." then it is cut and pasted, but someone leaves off the "I wonder if..." part.  And it is quoted.  And it is quoted again.  And next thing you know there it is, gone viral across the internet.  An idea which is now a "fact" quoted in numerous places.  Ridiculously, in the age of the information super highway, fact checking is not all that easy.  Especially if you have to go to the second or third page of your google search (seriously, who does that aside from parents of kids with rare syndromes...).  Yes, writers need to be careful what they write.  They need to fact check.  They need to take their time and do their research.  However, as readers, we have a responsibility to think about what we are reading.  If a statement is being made that women were not allowed to learn about the Torah in Jesus time, yet we know that Mary, mother of Christ, paraphrased  Hannah's song from 1 Samuel - maybe we should think on that a bit.  If we are being told that women in Jesus time were not allowed to hold property or conduct business, yet we know that Lydia was a "seller of purple" and women financially supported Jesus ministry, perhaps we should take pause.  Perhaps the role and status of first century women was more complex and nuanced than it first appears.  I guess what I am saying is, reading with an open mind is not the same as reading with your brain in neutral.  Maybe there are more shades of meaning within an idea than may first appear.

Disquieting point #3:
People seem to be building whole doctrines and belief systems based on internet articles and books without reading critically, fact checking, examining the Scriptures or testing the spirit.

This is not to say that I don't believe Jesus was counter cultural in his treatment of women.  He clearly was .  And in his treatment of tax collectors, prostitutes, unclean women, adulterers, lepers, demon possessed, Gentiles, Samaritans, blind people, children, religious authorities, EVERYONE.  But Jesus wasn't some Ancient Palestinian hipster who was cool before it was cool.  He didn't have 21st century "enlightenment" in the first century.  He has ETERNAL enlightenment, always.  Can I be right out there and suggest that perhaps, if Jesus walked the earth today, his treatment of people would STILL be counter cultural?  I have this weird feeling that if today's feminists were to ask Jesus "are you for us, or for our enemies?" He would answer "Neither, I am for me"

Disquieting point #4:
Perhaps if we find Jesus always agreeing with us and never challenging us, we should check that we aren't just talking to ourselves.

I am going to come right out there and say that there are parts of the Bible that I do not completely understand.  I don't get why they are in there and I don't see how they apply to me and my life.  But I know that they are in there for a reason.  Over the years, my understanding of scripture has deepened and scriptures which baffled and confused me once are now beautiful to me.  Am I any more saved now that I have come to an understanding of those scriptures?  No.  Will I be any more saved when I understand the scriptures that now baffle me?  No.  So I am not afraid of my ignorance, but I am humbled by it.

I had a lecturer once who, at the start of the semester, told us that if we were uncomfortable with the idea of going to bed with questions and without a full understanding of things, we were to leave his class right then.  But if we were OK with not knowing all the answers and were able to trust that God has them, even when we don't - we were welcome to stay.  I think sometimes we are afraid to admit that we don't understand something.  Scriptures that don't fit with our understanding of God get dismissed as "culturally specific" or "for a time and place" rather than us standing back and admitting that we don't always fully understand God.  That is no shame, to admit that we don't fully understand God.  Given all of eternity, I will still be learning more about God.

Too often I am hearing and reading about Christians dismissing scriptures which do not fit with their personal understanding of God, rather than questioning either their interpretation of the scripture or their understanding of God.  The lauding of personal "revelation" over scripture is becoming insidious within the modern church.  Of course, we DO need to question the interpretation of scripture when it does not seem to fit with our knowledge of God.  For example, I once knew a Christian woman with a fabulous sense of humour and an effervescent, cheery disposition.  She could talk to anyone and when she laughed, which was often, it was usually loud and long.  Then she was confronted with this scripture

"You are too loud," she was told "you are not being what a woman of God should be."  I was young and did not have the words to put together why this felt so wrong to me.  But I watched this woman.  I watched her struggle to quiet her loud laughter and heard her laugh less and less often.  I watched her hold back from talking to people and withdraw from the sparkling conversation she used to bring to every room.  I watched her struggle to be quiet, and her spirit become more and more stormy.  I wish now I had the sense to simply pull out a dictionary and show her that "quiet" is not always the opposite to "loud".  Sometimes it is the opposite to "stormy".  I wish I had the courage then, to suggest that perhaps God wasn't talking about volume control, perhaps He created her to have a loud mouth and a quiet spirit.  This experience taught me that not only is it acceptable to challenge the understanding and application of scripture - sometimes it is our duty to do so.  I do, however, believe that we need to question the understanding of scripture, not dismiss it as irrelevant to our times.

There is nothing wrong with challenging our understanding of scripture.  There is nothing wrong with saying "I don't fully understand that bit yet".  There is nothing wrong with admitting that we still have questions.  There is something wrong with just never turning to that part of the Bible.  There is something wrong with dismissing certain scriptures that don't fit with our ideas as irrelevant.  There is something wrong with exalting our own understanding and "revelation" over what is written in the Bible.

Disquieting point #5
Like many enthusiastic supporters of a particular doctrine, some of those in the "JESUS WAS A FEMINIST" camp are selectively using scripture and/or trying to make scripture fit with their own ideas.  I believe our ideas need to fit with scripture.

So where does this leave us?  What am I driving at with all this?

Personally, I am uncomfortable with applying a political or ideological label to Jesus.  It smacks of trying to make Jesus like us, rather than make us like Jesus.  It leaves Christians and Jesus open to misinterpretation.  It feels like putting Jesus in a neat, 21st century package made palatable to the modern world.  A TV dinner Christ.  I get why people do it.  Labels are a way of using shorthand to communicate ideas.  Regardless of my objections, there are still going to be people who feel this label communicates what they want to say.  My hope in writing this is that readers, and perhaps some writers, will stop and think about what is being said and what it really means.  While I have written here primarily about the term "feminist" being applied to Jesus, what I am really concerned about is bigger than this.

We have become a consumerist society and all to often ideas and rhetoric are being swallowed without deep thought or questioning on the part of the consumer.  This has the power to significantly damage the Church, which is perhaps the most disquieting thought of all.  While I will continue to, at times, be uncomfortable with the thoughts and questions of others I am OK with that.  Being comfortable in this life has never been an objective of mine and if I am never being challenged to think, ask questions or put my thoughts and beliefs into words and action, that is a sad state of affairs for me.  But for crying out loud, brothers and sisters in Christ, please use the brains God gave you.  The conversations we are having among ourselves should be of a higher standard than those found out in the world.  Instead ideas are pushed out into cyberspace and either swallowed whole or outright rejected.  Does nobody chew any more?  Disputes seem to descend quickly into unlovely exchanges.  Instead of bearing the mark which is supposed to distinguish us to the world, a love for one another, personal attack and accusation seems to be the norm when Christians disagree.  This creates discord in the body of Christ, meaning we spend more time fighting each other than we do ministering to this hurting world.  It also means that we do not discuss and explore ideas rather accept or reject them without exploration.  This leaves us vulnerable to false doctrine and heresy.

I have a friend who once, in frustration, yelled at me "You think you're ALWAYS right!" my reply was "Of COURSE I think I'm always right.  If I thought I was wrong I would change my mind!  If you have evidence that I am wrong, tell me.  Then I will change my mind and be MORE right!".  Yes, she still speaks to me over a decade later.  I believe I am right on this feminist thing.  I would love it if people agreed with me on this and stopped using the word in the context of labelling Christ.  The likelihood of every Christian writer out there who does this reading a semi-retired Mummy Blog and agreeing with me is not huge.  Perhaps a more realistic aim is that one or two people will read this.  That they will really think and pray about what they believe.  And in the future, when they read or hear something, they will chew well before they swallow it.

Chew your doctrine well, it is good for the Body of Christ.

Friday, October 12, 2012

Where are we now...

I have been considering doing a post like this since Kaylee's birthday six weeks or so ago but have only now had time.  Well, not so much had time as made time.  And today is another anniversary.  A year ago today Kaylee almost died.  She was revived by the Medical Emergency Team.  She was navy blue.  I was too dazed to be scared.  The support we got through this blog when Kaylee was small was amazing and I can never thank my readers enough for the way they supported us.  In the end, maintaining the blog was overwhelming and when I started to have people write to me privately to tell me I shouldn't think or write certain things, when people told me I had an "obligation" to my readers to blog regularly and when people in our real life began to be offended by what I wrote, I knew it was time to step away from the blog.  It was a small minority, but for me this was enough for me to say "enough".  I will not be returning to blogging publicly about our lives however I do feel that I need to wrap things up a little better.  This Blog still gets visited in dribs and drabs - mostly by people googling Cornelia De Lange - and I know that some of our regular readers are curious.



She is downright ADORABLE.  Seriously, this kid is cute as a button.  Healthwise and development wise, as is Kaylee's style, she is complicated but today I would say "doing well".

Heart:  When her heart was repaired in March the surgery went very well.  Unfortunately, the valve on the pulmonary artery (the artery going from her heart to her lungs) had to be sacrificed so at the moment about 50% of the blood that gets pumped out of her heart toward her lungs actually refluxes back into her heart, needing to be double pumped.  Because of this, her heart is bigger than other children her size and/or age and as she grows it is likely that her heart will start to struggle to cope with this extra load.  At some point, and nobody can say if it is 2, 5, 10 or 15 years away, Kaylee will need to have her heart valve replaced which means another open heart surgery.  Unless there are some pretty big advances in technology in this time, Kaylee's valve will then need to be replaced every ten to fifteen years for the rest of her life.  Right now, however, it is doing great.  In fact, during a nasty chest infection earlier this year Kaylee's O2 levels were so good she didn't even need extra oxygen!

Stomach/feeding:  Kaylee's Fundoplication and PEG insertion was largely a success.  Kaylee no longer has reflux as severely and tolerates having food in her stomach.  I feed Kaylee mostly via her "special tummy button" which I connect a tube to and either syringe feed her or connect a feed pump.  Most days she has a go at eating orally - by which I mean I offer her some tastes of yoghurt or something on a spoon and/or some formula in a special sippy thingy.  Sometimes she takes a bit, sometimes she takes a lot (as in, 3 teaspoons or 20 mls), sometimes she is not interested, sometimes she puts it in her mouth, plays with it and then spits it out!  Some people ask me if she will ever eat "normally" or be able to get rid of the button.  The answer truly is maybe - but maybe not.  A side effect of the surgery is she cannot burp so she currently needs to be "burped" with me connecting a tube to her tum then using a 30ml syringe to release bubbles.  In fact, as I type now she is sitting on my knee and I am holding the syringe in my teeth.  If I do not do this when she needs it she will be in a whole lot of pain and also vomit - yes, she can't burp but she can vomit past the fundo!  Talented girl this one.  It is very likely that her stomach surgery will need to be repeated in the future which we knew before hand.  I don't like this as it is a very painful procedure (I would say more painful than her heart surgeries) but it is better than living with the daily pain of reflux and the risk that would pose to her lungs.  I am praying it will be a while off before we need to worry about this anyway.

Cleft:  Kaylee's soft palate cleft is not really a hassle for us right now.  We had a chat with the plastic surgeon and we all agreed that Kaylee has been through enough for now.  We are all tired and we are taking a break for a while from surgeries.  We will re-evaluate where we stand with this in six months.

Things to Watch:  Kaylee has something I like to call "funky monkey feet".  Her toes are curled and her instep curves her foot around suggesting that perhaps some tendons are a bit tighter than they should be.  We are still waiting for assessments to come in on this but our plan for now is to massage often, watch and wait.  When she starts to stand or walk we may look at something to strap on her little feet.    Kaylee's eyelids droop to the point that she sometimes has to tilt her head back to see things in front of her at eye level, so we will need this assessed too, to evaluate the effect on her vision and decide if an eye-lid lift is on the cards.  I kind of hope not.  Kaylee's kidneys have always been a little kooky (small and with cysts) but they are functioning normally.  We probably wouldn't even know about them if she hadn't had so many ultrasounds etc with her heart.  None the less, they are on the "things to watch list".

Milestones:  I have a love/hate relationship with milestones.  I love it when we get there, I love supporting Kaylee to get there - I hate it when people ask if she is doing things that are so not even on the horizon yet!  I suppose developmentally Kaylee is at about the stage of a four month old however she does not support any of her own weight on her legs when you hold her up, she kind of hangs there as if to say "yeah right!  Not today!".  She rolls from side to side from her back and somehow (nobody can work out how) manages to migrate around the floor by doing this but as far as we can work out Kaylee has no idea where she is going, she is just rocking and rollin'!  She can sit for short periods in a bumbo chair.  She can reach out and grasp things and usually shoves them in her mouth (especially if it is her feeding tube which she loves to chew, much to the annoyance of her mother!).  She has a brilliant smile and a unique laugh which is a bit of a gravelly honk.  She kind of grunts and honks and "sings" sometimes too.  She is all gums still which isn't unusual for kids with Cornelia De Lange.

Goals:   Right now we are working on helping Kaylee learn to sit, encouraging her roll, working on her upper body strength (she can't hold her self up with her hands if placed on her tummy leaving her in an uncomfortable face plant position!) and helping her to learn to eat something orally.  

Will she ever... When these words leave people's mouths about Kaylee, I never know what to answer.  The future is a big bundle of unknown.  Things could go super well.  She could need minimal surgeries in the future, her development could all of a sudden speed up and, if not catch up with her peers at least keep her somewhere in the ball park, she could suddenly start talking or walking or eating and doing a million other things.  Or she could start having seizures, aspirate, her lungs or heart could become compromised - Very Bad Things could happen.  Likely, the future will be somewhere in the middle of that.  With Kaylee, it is a matter of climb on for the ride.

The Other Kids:  Are brilliant.  They are amazing.  I am prouder of them every day.     

Me:  So how am I?  Honestly, most days I am trying to work that out still.  I look back at this blog sometimes to see what we were doing this time last year and it is almost surreal.  To be honest, I think I sugar coated a lot of things when I blogged without meaning to.  Frankly, it was hard to admit to myself how bad it was.  It really was harder than it looked, there was less support than I let on and it was scarier and more exhausting than I could ever convey.  I am happy and content now for the most part and in many ways I have a greater acceptance of Kaylee's diagnosis than many of the people who love Kaylee but don't live with her, because I understand those intangible bits of wonderful that she brings so much better than they do - I see the wonderful every day.

But I have been angry a lot of the past year too - and not always justifiably.  I have been angry at the loss of autonomy we have endured, being forced to make impossible choices and let go of dreams and plans that we had.  I have been angry at people whose own internal dramas and pain have caused them to make our lives - already impossibly difficult - harder.  I have been angry at people who have been all too willing to spout words on the internet but when it was possible to visit us or help us in a practical way, they were all of a sudden too busy.  I have been angry at people who tried to help with the best of intentions but because they did not first listen or ask, actually made our lives more difficult or placed us in an awkward position.  I have been angry at people who tried to tell us what to do or how to manage our lives.  I have been angry at people who simply stopped showing an interest in our lives once the "drama" stopped being blogged for their convenience on the internet.  I was angry at my own limitations.  Sometimes, I was just angry because being angry is easier than being scared, sad and hurting.  Sometimes there has been a big, complex ball of emotion inside me and I have not been able to separate anger from joy, happiness from sadness, frustration from relief - or anything else.  At times my anger and frustration has spilled out toward good people with good intentions who made innocent mistakes or whose good intentions did not work out.  I have done damage to relationships and have a lot of rebuilding to do.

My patience and reserves have been low.  I have found it hard at times to relate to my "ordinary" friends.  More than once I hung up from talking to someone about their breastfeeding trials and had a cry, remembering the hope I had that first time Kaylee tried to go on the breast, the ache I had as I cried for fifteen minutes before expressing  when she was six months old because I just didn't want to do it any more and the gut wrenching grief I experienced as I made the (right) decision to stop expressing when Kaylee was eight and a half months old and I was beyond exhausted....and knowing that this may well have been the conclusion to my journey of feeding my babies.  I do find it harder to be generous with myself to friends and family these days.  While Kaylee is healthy right now, her care is still demanding and exhausting and constant.  Several friends I have an agreement with that if I am not in a place to hear their tales of ordinary trials and triumphs, I just need to say and we will connect again later.  I am thankful for friends like this.

I get awfully frustrated with people who call me 'inspirational' and tell me they could never do what I do.  Firstly, I don't need those kind of expectations to live up to.  I don't find it encouraging, even though it is well meant.  Secondly, I find that people often say these things as a way to distance themselves.  Someone who is "inspirational" doesn't need help or encouragement or friendship or a listening ear.  Thirdly, some people seem to use this as an excuse to under achieve in their own life.  I have pushed myself to the limits of my endurance in the past year or so and let me tell you, they are further than you think.  It isn't because I was strong or special, it was because I simply got off my backside and did it.  I believe most people are stronger and more capable than they realise if only they get up and work at it.  Most of the time I take it as intended and realise people are trying to be encouraging but there is more than one person who I have had to simply ask to stop saying it.  One or two haven't listened, but for the most part people are indulgent if not understanding.

I have learned a lot about listening.  The most helpful to me have been the friends who simply asked then listened.  I have been blessed beyond measure by these people.  There are so many who just keep talking and talking to fill up any silence, so many who surged ahead to push assistance on me regardless of my feelings toward that assistance or how helpful it would actually be.  The golden few who truly served as balm to my soul simply listened.  At times prattled about their own lives and shared their beautiful ordinary and frustratingly ordinary with me - but when I needed it, just listened.  I hope I can listen like that to my friends when they need me.

Managing our medical and therapy staff has left me wishing I had about six different degrees and x-ray vision.  Turning up to a hospital means I will have to educate people about Kaylee's syndrome and condition which I don't mind terribly (I love med students and usually get at least half a dozen through if we are admitted - last time I had four in Emergency alone!) but there are days when it is hard.  Because it is not just the students that don't know about Kaylee's condition, it is the nurses and the interns and the registrars and the consultants.   The truth is, I have no access to any expert who knows everything there is to know about Kaylee's condition.  I can access heart specialists, plastics specialists, physio specialists, CdLS specialists and a million other specialists - however all of them are specialists in one aspect of Kaylee, not all of Kaylee - and all of them are very busy people.  I am constantly on duty if she is unwell and I have found myself having to second guess and question some very clever people simply because I know Kaylee better than they do.  Fighting red tape is a full time job.  Everywhere is under funded.  Because it wins more votes to launch a new program rather than improve funding for an old one, there are about a million different programs that could contribute to Kaylee's care and all of them are under funded and many have waiting lists that are hugely long.  However I have met some brilliant people with amazing knowledge and generosity of spirit and I thank God every day for so many of the nurses, doctors and specialists we work with.

Support groups are great, but the flip side is we always know of someone who is sick or fighting for their life and I have written more letters and messages of condolence in the last year than I ever have before - for beautiful, bright young people who have held a place in my heart.  But there are some things that nobody except parents of kids with special needs will understand.  They are in many ways a part of our family now.

We are slowly finding our new normal.  We have dreams of camping this summer.  We have some dear friends who drop us off a meal or two every now and then - which was a life saver recently when we were all taken out by an awful bug, Jon and I hit worst of all (Kaylee managed to avoid it by being on hefty doses of antibiotics already due to her chest infection!).  We have also hired  a friend to help keep us up to date with the laundry and cleaning once a fortnight which is so helpful.  Being that most of our family and a great many of our friends live far away there is little in the way of practical help for us so the ministry of this family is invaluable to us.

There are days when things hit me.  Earlier in the year Kaylee had her heart check up.  It was largely a tale of "nothing new, we will see you in 6 months" however it all of a sudden occurred to me that Kaylee will likely need heart surgery when she is an adult, and I am old.  A million "what ifs" could hatch out of that.  What if she doesn't understand?  Will she be as frightened as a little girl but in a woman's body?  If I am too old, who will advocate for her?  Take care of her?  There are a million what ifs and I could drive myself crazy if I try and travel each road before we take that turn.

Most days I soak myself in dimples.  In crazy hair and impossibly long eye lashes.  I watch her siblings play with her and dote on her.  And I realise that my blessings are really without number.  I live for each moment.

Yesterday was what it was, tomorrow will be what it will be but today is good.

Tuesday, June 05, 2012

Here on the other side...

Kaylee came through the surgery with flying colours.

She is sleeping peacefully.

I have already started trying to coordinate the half a dozen professionals who I want to speak to this week.  It will be a challenge to get them up here, but I will do my best.

I need coffee.

I need sleep.

And I need a whole heap of slack right now.

I am so thankful for the people who care about us and who put up with the crusty, abrasive parts of my personality (yes, I do know it is me and not you).  I ask that everyone just holds on for a while longer.  I anticipate a return to humanity in a month or two.  Right now, I am so crazy with busy and finding my feet and being there for my husband and kids I can hardly breathe.  I have had some lovely people try and extend their hand in friendship via the internet when they have read this blog and I am afraid I have not been in a place to grasp that hand right now.  I have some amazing and wonderful friends who are there for me and to be completely candid the thought of trying to bond with new people makes my poor introverted soul feel stretched beyond all reason. 

I maintained this blog with the idea that I would give my family and friends insight into what we were going through, that I would advocate for those in a similar position to us and I would provide a resource for other families going through similar experiences.  I have found it increasingly difficult to balance all those things.  To blog honestly and candidly means saying things that have worried, offended, angered and distressed people who I care about - especially those who recognised themselves on this blog or those who felt I should not feel/act a certain way.  To blog only the sanitary, "nice" bits is to completely short change, if not outright betray, those in a similar position to us.  After a few months of prayer and thought, I have decided to put this blog back on ice.  If I ever to return to writing it will be anonymously so I can be as candid as I like without hurting those I care about - but for the next few months I will be focusing on finding our new normal.  I want to thank, from the bottom of my feet (which is even lower than my heart) everyone who has read this blog, left comments of encouragement and/or whispered a prayer for Kaylee and our family.  We have been blessed abundantly.  I am so blessed I can scarcely comprehend it.

Thank you all.


Friday, May 18, 2012

Surgery date...

June 5.

Praying we will be ready, healthy and get this thing done.

Saturday, May 12, 2012

Poems by my big kids

Erin has a membership to the kids science club run by the CSIRO and gets the bi-monthly magazine.  The most recent one has a competition for kids to win a plush toy if they write a poem about the Kakapo - a critically endangered ground dwelling parrot from New Zealand.  Anyone who knows Billy will know that he has a strong adoration for plush toys!  So he and Erin have written the following poems with very little help from me (I asked Billy what rhymed with 'much' after he wrote the first two lines and he took it from there).  The result of many afternoons reading poetry over tea and biscuits I think!  A couple of the many reasons I am proud of my two big kids.

The Kakapo
By William “Billy “ Steven Guest (age 5)

The Kakapo is nice to me
I love him so very much
He hides in plants and things
He would be soft to touch
They take care of their chicks
They climb into trees with their claws
That is so very true
Until cats come with their paws

The Cute Kakapo
By Erin Guest (age 7)

The Kakapo is very cute
And it has a green feathery suit
Even though it’s a flightless bird
The male makes a boom that can always be heard
The kakapo is very nice
Until a cat comes up to slice
We should protect the kakapo
And so
We should keep our cats indoors
To keep mischief from their paws

Thursday, May 10, 2012

No news is good news

We finally got rid of the colds (or URTI's - upper respiratory tract infections.  Somewhere along the line I have started talking in acronyms)

We are waiting for our general surgeon to get back from holidays and give us a surgery dare he have a life!

There is sunshine.

There are dimples.

There are zoos.

Life  is beautiful.

And hopefully in a few weeks there will be substantially less vomit.

Friday, April 27, 2012

Why It's Rude to Stare

I sat in the foyer with my children waiting for Jon to talk the young girl at the counter into letting us in for free even though we left our membership card at home.  The kids prattled excitedly about the exhibits we were going to see in the science museum and the snacks I had packed in our bag. 

A little girl, about six maybe, ran up to the pram and peered in to see the baby.

Her jaw dropped and her eyes almost bulged as she stared at the tube coming out of Kaylee's nose.

I could see this yellow tube and the white tape fixing it in place had all but eclipsed the pink cheeks, long lashes, dark hair and pink bow in her mind - she didn't notice the baby, just the tube.

Her eyes oogled at the small bundle wrapped in the pink blanket against the cold of the blustery, wet autumn day.  She followed the tube to it's source, the purple pump and the bottle hanging upside down.

There was no question asked, no comment .... just staring.

After many minutes she was called away by her family who were leaving the museum and turned, without a word.  Not even acknowledging the existence of the family and the baby behind the tube.

Later that afternoon a little boy, perhaps four, looked in the pram.  He looked at me and asked what the matter was with her nose.  I knelt down and explained that Kaylee was born a bit sick and can't eat with her mouth so she has a very special way to get her food through this tube right down into her tummy.

"Uhhuh" he said

then ran away to play on the interactive exhibit with the other kids.

And that is why I teach my children not to stare.

Thursday, April 19, 2012

The techie stuff and frequently asked questions

What is a fundoplication and why does Kaylee need it?

In the context of Kaylee, a fundoplication is a surgery to prevent reflux.  The valve where Kaylee's stomach and oesophagus join does not work very well..  Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't.  This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery.  The first is that her reflux is extreme.  The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit).  Vomit in the lungs is not great.   It effectively starts digesting the lungs.  A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet.  In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc.  Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being.  The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome.  Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux.  Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all.  Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.).  Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.

The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus.  This closes up the opening somewhat and prevents reflux.  Kaylee should be able to have food in her stomach without fear of aspirating.  She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally".  It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.

What is a gastronomy and why does Kaylee need it?

All her life Kaylee has been fed using a feeding tube of some sort.  Currently she is fed via an NJ tube.  I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems.  And it is a pretty long list actually.  Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc.  Kaylee is unlikely to start feeding orally in the very near future.  Not enough to sustain her anyway.  There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her.  So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into.  It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly.  It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air.  While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes.  Without a tube, Kaylee would not survive.  A tummy tube has the fewest negatives and the most positives.  We are getting the tummy tube.  A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.

When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule.  We are thinking a couple of weeks at this stage

What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area.  While I have no desire whatsoever to move permanently away from Tassie,  it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment.  Staying here with our friends has also been a time of rest and healing for us.  Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders.  Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality.  We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one.  We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries.  The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals.  Home really is where the herd is!

Friday, April 06, 2012

The next step

Over the last fortnight, I have unpacked our friends house.

When we came to stay they had been here only a short time so there were boxes everywhere.  I threw myself in with abandon.  Every box has been opened, every book shelved, every ornament dusted and a place found for it, every item of Tupperware paired with its lid.  I ran out of shelf space for the books so bought myself a bookshelf for my birthday so I could keep going.

As I sit here I have an immense sense of satisfaction.

I never used to be like this.

I never used to clean when stressed.

But somewhere along the way I started cleaning parent rooms in the hospital at midnight.

I think it's because I feel like I am falling.

I like control.

I like being able to predict what will happen next.

I like knowing my options and choosing what to do next.

I sorta, kinda, little bit know what is going to happen next in the same way that a skydiver knows that the ground will be intimately involved in what happens way or another.

Kaylee's general surgery review will be on the 11th of this month.  At this appointment, I will find out if Kaylee's tummy surgery will  go ahead and what timeline we will be looking at.  But with these answers, as with most answers I get these days, come a million more questions.  Will we stay here with our friends close to the hospital until Kaylee's surgery or go home to Tassie?  What button (the type of feed tube placed through Kaylee's tummy) options do we have down the track and how/when/where will we be dealing with changes to the type of button?  There are several ways the fundoplication (part of the surgery where they wrap some of the stomach around the bottom of the oesophagus to close it off a bit) can go wrong, how will we deal with it if some of the more common complications occur?  How long are we likely to need to stay around Victoria?   Who will be our go-to person for tube management once we leave the hospital?  What about when we go home to Tassie?  What will we be doing about her feeding orally and when?  Who will be involved in those types of decisions long term?  When/where/under what circumstances will we have her fundo assessed down the road?

And on and on and on and on....

And like a cartoon coyote putting up an umbrella while plummeting off a cliff, I shelve books to carve some sort of order out of the chaos that my life has become.

Early in the morning, I go for a walk by the bay.

To exercise, to get a few moments of solitude before plunging into life in a household of 14 (4 adults, 10 kids under 8 - sometimes we feel a little outnumbered), sometimes to cry and always, always to pray.

The other morning I was so tired I could hardly move but I walked by the bay and watched the sun come up, the birds wake up and start their day and the earth take a deep breath to start the day.  I sat on an old concrete cylinder in the sand among the grasses and succulents, my whole body drooping with weariness and I cried.

I told God that I do NOT want to know if this surgery will be the answer we are looking for.  I don't want to know if Kaylee will walk, talk, live independently.  I do not want to know if my other kids will handle their sister's disability with grace.  I do not want to know how my marriage will weather this storm.  I don't want to know about medical staff, therapies, where we are going to live, what we are going to do.  I don't want to know any of it.  The knowledge I have is already far too heavy for me to carry.  I want to skip all of it anyway.

All I want to know, all I want to see, is my family in heaven.

Kaylee chowing down on the fruit of life before running by the river with her brothers and sisters.

Watching them with my husband.

All the crap, vomit, blood, pain, heartbreak.........gone.

I want to skip to the end.

I looked down and saw hundreds of small shells.

I thought absently that I should gather some up to teach the kids about the Fibonacci sequence.

I don't even know what numbers are involved in the Fibonacci sequence.

And God said "I do"


"You don't always know the math of what I do.  You don't always understand where I am going.  You don't know the end result.  But I got your back.  Like the snail that never sees its own shell and the butterfly never sees the beauty of its wings - you don't see the pattern I am making in your life right now.  But trust me, the math works out.  And one day there will be no more crap, sweat, blood, tears, pain, therapy, doctors, red tape, vomit, needles, drugs... one day it will be beautiful."

"You are tired?  Rest in me.  Is your load heavy?  Give it to me.  Are you worried?  Trust me."

So I will keep doing what I can about the things I can do something about.

I will keep moving forward.

I will take the next step, even when it involves stepping off a cliff.

And I will leave the math up to God.

(by the way, I looked it up.  The Fibonacci sequence 1, 1, 2, 3, 5, 8, 13… Each number is the previous two added up. The ratio of two consecutive numbers approaches 1.6180…, or (1+Sqrt(5))/2, which is called the Golden Ratio.  It's brilliant)

Friday, March 30, 2012

Postcard from Melbourne

I have so much to say but not much time to write now-days so take this as a postcard (without the picture) and a promise of more later.

We are currently staying with friends who recently moved to a much larger house than they are used to so in spite of the fact that we have ten children under eight between us, we all seem to be co-habiting pretty well.

Kaylee has stayed out of hospital since that last "vomiting green" emergency trip.  Her cardiologist is very pleased with her and we won't have to have another cardio assessment for six months, and then it will probably be in Tassie.  She will need another surgery to deal with her leaky pulmonary valve and artery but we are hoping that won't be until she is grown and can have the adult solution rather than a temporary kid fix.

Kaylee will have a general surgery review for her tummy surgery on April 11 and we will then know what type of surgeries she will need (we have a fair idea now, we just need the official stamp) and we will be able to talk about dates. 

We are planning to stay in Melbourne until after the gen. surg. review on April 11 - but if you are planning to rob our house you should know we have a very vicious cat who is being fed regularly by the armed guard who patrols our property.

Erin's croup is continuing to improve and the only trace left is a bit of a husky voice.

Andrew had a quick trip to emergency for steroids due to croup Wednesday night but seems OK now although extremely clingy and whingy - which is to be expected.

Billy spent 36 hours vomiting with a fever starting Monday but is OK now and by some miracle nobody else got it in spite of 5 kids sleeping in the same room, many of them sharing beds.

So far the kids belonging to the family we are staying with seem in good health - again, a miracle!

My lovely friends at the hospital have wrangled the system to get us a decent feed pump to use while we are in Melbourne and by the time we get back to Tassie the new tender should be in force and we should have a decent one there too.

Once the kids are healthy and rested we are hoping to do a bit of sight seeing and tourist-y stuff but right now we are powering down and re-connecting as a family.

The weather is......Melbourne weather.

Glad to be not in hospital.

Wish you actually, we are enjoying a bit of space right now.

Will rejoin society at some point.


Saturday, March 24, 2012


It is past midnight.

I am waiting for Erin to go to sleep.

She is having trouble going to sleep because of all the noise at the nurses station outside her door.

We have been admitted to emergency overnight for her croup.

Kaylee got discharged last Tuesday and for one reason or another I have spent the majority of my waking hours at the hospital ever since - with Kaylee vomiting odd substances, tubie stuff and what-not and today Erin waking up with an inflamed throat stopping her from breathing properly (croup).

Tonight I haven't showered for about three days, I am knackered beyond all belief and I highly doubt I will get any sleep tonight.

A friend from the cardio ward died this week and I missed the memorial because I was too busy here at the hospital sorting out "hospital" stuff.

Packing up our stuff and preparing to leave has been thrown entirely onto Jon's shoulders as he wrangles children in the communal living setting of Ronald McDonald House.

I have fought, grieved and struggled with gritted teeth this week.

It has, by many measures, been a crappy week.

But a friend of mine brought her daughter - who she had fought to keep alive for over a decade and a half - into this emergency ward this week.  And she never got to take her home again.

Tomorrow my daughters will get in the car and we will drive away from here.

Friday, March 23, 2012

A tale of tubes and tanties

There are two basic feeding tubes that go through the nose.

One is an NG tube which passes through the nose into the stomach.  This is the most common and is used often to help people who for some reason cannot or will not eat enough food to sustain them i.e. premature babies, people who are having trouble swallowing for whatever reason.  Usually it is inserted through the nose into the stomach then the carer draws up fluids using a syringe and checks with litmus paper to see that what was drawn up is acidic, making sure that the tube is sitting correctly in the stomach rather than the lungs then you're good to go.  It is not that hard to do and a "lay person" can be trained to do this at home.

The other tube is an NJ tube.  This tube passes through the nose, into the stomach but keeps going through the pyloric sphincter (the valve between the stomach and the intestine) into the small intestine.  It then has to go past the first part of the small intestine (called the duodenum) and sits in the next part of the small intestine called the jejunum - hence the J in NJ.  This is usually inserted with access to an x-ray so it can be determined that it is sitting in the exact right place.  Do not try this at home kids.

Kaylee has the second of these two tubes.

This is not a fact that I relish.

I did not just knock on every door to make sure this was our only healthy option for Kaylee after this admission, I BANGED on every door.  In fact, I stalked a gastroenterologist and threw a huge tantrum in emergency with tears and snot and everything until he came down and discussed Kaylee's treatment plan with me in detail.

Because that's what us parents do.

We advocate for our kids.

But Kaylee needs this NJ tube.  I am convinced beyond a shadow of a doubt and believe me I took some convincing.  I was a very hard sell.  They had to work hard to convince me that the only healthy option was to have my baby hooked up to the feed pump pretty much 24 hours a day.  They had to work hard to convince me that the only healthy option was subject Kaylee to having a tube shoved a LONG way into her digestive tract while exposing her to x-ray.  There is something inherently disconcerting about putting yourself in protective clothing so you can stand and hold your child's hand while they expose her to the rays you just clothed yourself in lead to avoid.  They had to work hard to convince me that her food needed to bypass her stomach and the acids in there that would help her body use her food more effectively.  They had to work hard to convince me  that we needed to stick with a regime that means whenever Kaylee's tube blocks, kinks or gets pulled out we need to disappear into hospital (home of nasty germs) - and it will likely happen just as we are baking a birthday cake, or planning a trip somewhere or trying to just have ONE day of NORMAL.

The fact of the matter is, what is in Kaylee's stomach takes regular trips up to the back of the throat and quite often all the way out.  The more that is in her stomach, the more likely it is that a detour will be made into her lungs and start breaking down her lungs.  And research and experience shows that Kaylee's reflux is only going to get worse.

So we are in need of a surgical tummy renovation and until we get it, we are on the NJ tube.

Kaylee's tummy renovation will include a different type of tube which will go through the wall of her tummy giving her a cute party trick of being able to eat without anything in her nose OR mouth.  We  will be able to hook up her feed to a little tube installed on her tummy which will look like the bit where you blow up a beach ball.  It will mean no more NJ.

This is our next step.

And I am very ready to take it.

We just need to wait for the cogs to turn, the red tape to be cut and the paperwork to be done and it to be our turn.  So we are going home to wait and come back to Melbourne and do this thing.  And I will not be sad to say goodbye to our NJ.

Monday, March 19, 2012

Update and why I keep a nature journal

I am sorry for not keeping everyone better up to date but no news has been largely good news.

Kaylee's heart op has been a resounding success.  Her artery is a wee bit leaky and a wee bit narrow still but that is to be expected and we just watch it until she has another surgery somewhere down the line - possibly not until she reaches puberty.

All the specialists, nurses and random staff members involved deserve sloppy kisses and big fat gold stars and Kaylee herself deserves a galaxy of gold stars and gets lots of big kisses.  We have dodged every bullet and the only complication has been an easily managed urinary tract infection.

Now we are over that first big scary hurdle it is time to focus on what's next.

Formulating a plan of how to do that involves numerous specialists, departments and the negotiation skills of an UN mediator.  Anyone who feels they are being left out of the loop where Kaylee is concerned, rest assured, there is no loop.  There is currently a great big blob with me sitting in the middle of it closing my eyes and praying to have the strength NOT to beat a gastroenterologist with a haggis until he sees things from my perspective.

Kaylee's feeding needs sorting, a plan for her gastro stuff needs formulating, a timeline which takes into account the fact that her cleft needs fixing needs making and a plan for future cardio assessments needs reviewing.  This could take one day, one week or one month.  Welcome to the world of special needs parenting.

In the middle of all this I am trying to carve out time to sit by the window and write in my nature journal.

My nature journal is a random collection of bird identifications, cloud descriptions, pondering on the weather and ruminations on the picnic-ing habits of the staff and families here at the hospital.  There is the odd very amateur sketch or feather sticky taped in.  Much of it would not make sense to anyone else.

Why bother with this when there is so much else taking up my time?

Because of the answer God gave Job.

When Job asked that universal question of "Why?" God replied with a long description of the wonders of creation.  If you stayed only with a surface reading of this book, you could be forgiven for thinking that God dodged the question.  But the truth is, God recognised the true question within that "Why?

There is no answer to the "why?" question which will satisfy us in this lifetime.  Nothing will make it OK.  The true question within each of us - the question that bursts from us louder and clearer when we are stopped still by trauma - is: "Are You bigger than this?"

Are You bigger than this pain?  Are You stronger than this disaster?  Can I trust You to make this OK?  Even this?

And written in the love letter of creation is a very clear message:

I am Huge.

And written in the Word is another:

I love you.

And if you put these two together.....
it makes tomorrow not so scary. 

We are having fun with cuddles, trips to the zoo and a million different good things and I am working hard to get a plan to deal with the not-so-good things.  Kaylee is doing beautifully.

And when I am tempted to yell at specialists or stress about that which is yet to happen, I grab my pencil and write about clouds.  And for a moment or two, remember that God is Huge, and He loves me.

Wednesday, March 14, 2012

Breath, then do the next thing

Miss Kaylee Grace is breathing room air.

No prongs, not dots, no nuffin!

Our old foe reflux is ramping up now that Kaylee is getting all her food through her tube and the tummy doctors are getting involved.  There are rumblings in that area and I will share what the plan is once we have something more definite.

I have been writing in my nature journal and watching the birds and parklands out the window of Kaylee's room.  It is an indulgence that is doing me good.  Somehow writing down the names of clouds, birds and trees and stretching my writer's muscles in a different direction gives a bit of balance to my mind.

Kaylee is not happy today with reflux and tummy pain.  I am hoping the tummy doctors can make a good plan for my girl.

Monday, March 12, 2012

coming home...

Coming on to Koala ward, with the cardiac nurses who I know, love and have worked with on and off for six months, is like coming home in a way.  ICU was fabulous with Kaylee ticking every box correctly and we caught up with a few old friends and made a few new ones - but here on Koala is home.  Partially because here is where I get to work.  This week we start to look beyond the ticker.  This week we start to put together a time line of treatment and therapies.  Our room looks out over the parklands.  I watch the trams go past, the rainbow lorikeets in the gum trees, the joggers running past - all oblivious to the fact that I am sitting in here with a miracle, working hard to enable more miracles to happen.

She is pink and beautiful (as opposed to slightly purple/blue and beautiful).  She wants to play and gets all excited then realise moving around makes her chest hurt and grumps which is sad and funny all at once.  I expected to still be in ICU at this stage, maybe even still intubated, and she has surprised me.  I always feel mildly guilty when she surprises me like this, like it was wrong of me to underestimate her, but the truth is nobody expected her to bounce back this quick. 

Of course the last few days have not been without their hiccups.  We have had feeding tube issues - the kinks of which I am still (quite literally) trying to work out.  She is being treated for a urinary tract infection.  Erin has come down with a gastro bug so we are juggling that with the knowledge that if the other kids come down with it too we will have to ship Jon and the kids elsewhere and none of the kids have been able to see their sister since the operation as a consequence.  Plans for visits to the hospital, zoo and museum are on hold.  And it will take me several years to catch up on sleep if ever I get the chance

But her heart is beating, her skin is pink, we are making plans and to a certain degree, we are home.

Saturday, March 10, 2012

Pink and pretty

Kaylee is doing amazingly well.

She is breathing with just a puff of O2 via prongs.

She is awake and chatting.

She is fantastic!

Thursday, March 08, 2012


Left my beautiful girl with a big fancy pants anaesthetist today.  He opted to cuddle her all the way to the theatre so she wouldn't have to lie flat and get reflux.  He apologised to her for not being as good as Mum.

I left her and took the kids to the zoo.

The surgeon called me 7 hours later and told me that everything went without a hitch.

I am waiting for her to get settled in ICU where I will see her, still and sleeping, with tubes and wires, with her broken heart on the road to being fixed.

Praise God.

Wednesday, March 07, 2012

Count Down

We are on the count down now.  We have everything organised for tomorrow morning and barring crisis Kaylee will be in surgery by mid-morning.  Pre-admission is not terribly fun.  Lots of blood tests, poking and prodding.  I am not a huge fan of CT scans.  Beforehand we had to try three times to get a line in then I had to preserve the line for an hour and a half by trying to get her to not wriggle her foot, which was taped up and strapped down but her little toes kept wriggling.  Then we had to hold her down flat while she was put into a beanbag thing and sucked the air out of it to hold her still (lying flat+Kaylee=reflux).  Then they inject a radioactive substance into her vein and wear lead vests while the big scanning machine she is in takes pictures of the radioactive stuff moving through her heart.  All the while knowing that if at any point anything mucks up the pictures she has to have a general anaesthetic (with all the inherent risks) to get the pictures.  And that is just a simple test to prepare for the big stuff!

In every hallway I am seeing someone I know.  Every second nurse who I see is someone I have spent many hours watching over my baby with.  Having my older kids here is a balm for my soul and we are loving being together.  There are playgrounds, fish, sculptures, TVs and computer games to experience.  Having Jon here is like a drink of cold water on a hot day.  The first time I went in to the hospital I came across one of our old room mates.  Dempsey is a few weeks younger than Kaylee and she is from interstate too.  She just had a similar surgery and came through with flying colours - going home less than two weeks post-op.  This morning we went to the zoo as a family and checked out the monkeys and the butterflies.

As always this is a curious mixture of hard, frightening, miserable, beautiful, wonderful and amazing.

Saturday, March 03, 2012

Why I don't write about my other kids much....

You may have noticed that I haven't written much about my other kids lately.

It isn't because they are forgotten. 

One of the reasons is because, as a mother, I need to remember where my story stops and their story starts.  And I need to remember what is mine to tell and what is not.  I remember being shocked, embarrassed and upset when overhearing my parents and teachers talking about things that I had told them in confidence or things I had done that they had been privy to.  When my children are going through an especially vulnerable time in their life, adjusting to the needs of their little sister, it would be very unfair of me to share what is theirs with the world.  I need to respect their privacy.

Another reason is I need to remember that what  I do effects their relationships with each other and with other people.  I retired this blog a while ago.  This is in part because people had said to me on several occasions "Sorry I don't call/visit/write but I read your blog posts so I know what the kids are up to."  Now being a writer is HARD work.  Honestly, one blog post takes me a couple of hours to a week to write.  And no matter how hard I try I still have people COMPLETELY misinterpret what I write.  For example, I had one concerned reader write to me "angry and upset" that I would threaten violence publicly after I wrote THIS post.  I had someone else tell me just before I put the blog on ice that when they read my blog all they read was how hard I worked and how difficult my life is.  Which is about the opposite of what I was actually trying to portray with this blog at the time!  So I figure if people are going to use reading my blog as a substitute for actually having a relationship with my kids and getting to know them as individual people - well, I don't need that kind of pressure in my life right now.

I continue to blog about my journey and to use this blog as a platform to advocate for and educate about special needs.  By association some of my family's life is shared and they have been gracious to agree to this.  But all I will say about my big kids right now is I am SO PROUD of them I could burst.  Each of them is dealing with the stress in our lives in their own unique way.  And every time I look at them a little pot of love in my heart boils over because they are SO DANG CUTE!

But the sharing of their lives on the internet will be limited to photos and the odd cute thing they said or did.  Their inner world is their own.